What is Benson's Syndrome?
Posterior Cortical Atrophy. PCA. Hmmm...
Wikipedia reports that Benson's Syndrome is "a form of dementia which is usually considered an atypical variant of Alzheimer's disease (AD). The disease causes atrophy of the posterior part of the cerebral cortex, resulting in the progressive disruption of complex visual processing."
Yep.
Okay, so here is my understanding of Benson's Syndrome:
My mom, an accomplished pianist since a young age, can no longer accurately find the keys on her piano. She can no longer "read" music. When she tries to play by memory, her fingers don't land on the right keys.
"Oh, are we driving over a bridge?" No, mom.
"Who is that standing there?" Nobody is standing there, mom. That's a telephone pole.
Several years ago, my mom started a sort of shuffling type of walk. We thought it was related to her recovery from a difficult knee replacement surgery years before. As time went on, we noticed that she became very hesitant if the texture or color of the floor changed. Now we know that her perception of distance and space has changed - her perception of what she is seeing and how she processes what she is seeing is altered. Skewed.
Of course, when my mom's vision first seemed to be "off," she made an appointment with the ("highly respected") eye doctor. He said, "your eyes are fine...maybe just a little dry!" ... and sent her on her way. She went again a year later. He put her through the regular battery of tests. "You're eyes are fine... maybe a little dry!" No curiosity about what she was reporting. No referral for further tests. "Well, the doctor says my eyes are fine, so my eyes must be fine."*
*yes, if you are sensing my frustration, you are reading this correctly. I am afraid that folks (especially women) probably get this kind of dismissal frequently. Believe me, if you are not seeing things correctly but the doctor says your eyes test out fine...you must insist to be checked further. Whether that be an MRI or other scanning, follow up!
Everything my mom is seeing is skewed. We don't really understand what she is seeing or what she perceives now. Today, she still knows who we are - and I am so thankful for that. I also understand that this may change at any time. She also knows and recognizes many important people in her life. If we mention a dear friend or a relative, she can usually tell us a story about that person. Her stories about her brothers are my favorites. She was obviously a bossy big sister. As a bossy little sister, I appreciate and adore this quality in her.
Can you imagine playing the piano since the age of 3... spending your whole career teaching and playing and listening to music... and then - STOP? Red Light. The muscle memory no longer works properly. The translation of notes on a page to fingers on a hand to keys on the piano is indecipherable. Nothing works. Well, at least not in the magnificent way it did before.
What is Benson's Syndrome?
It is a complex puzzle. A degenerative neurological condition with no cure. It is a new genre of music with strange rhythm and beat. The notes don't sound the same. The key signature has changed. So we have to change the way we listen and the way we respond. Major becomes Minor. Minor becomes Major.And we all tune in our ears, as I am this moment, to those beautiful times when the notes come out just right.
Posterior Cortical Atrophy. PCA. Hmmm...
Wikipedia reports that Benson's Syndrome is "a form of dementia which is usually considered an atypical variant of Alzheimer's disease (AD). The disease causes atrophy of the posterior part of the cerebral cortex, resulting in the progressive disruption of complex visual processing."
Yep.
Okay, so here is my understanding of Benson's Syndrome:
My mom, an accomplished pianist since a young age, can no longer accurately find the keys on her piano. She can no longer "read" music. When she tries to play by memory, her fingers don't land on the right keys.
"Oh, are we driving over a bridge?" No, mom.
"Who is that standing there?" Nobody is standing there, mom. That's a telephone pole.
Several years ago, my mom started a sort of shuffling type of walk. We thought it was related to her recovery from a difficult knee replacement surgery years before. As time went on, we noticed that she became very hesitant if the texture or color of the floor changed. Now we know that her perception of distance and space has changed - her perception of what she is seeing and how she processes what she is seeing is altered. Skewed.
Of course, when my mom's vision first seemed to be "off," she made an appointment with the ("highly respected") eye doctor. He said, "your eyes are fine...maybe just a little dry!" ... and sent her on her way. She went again a year later. He put her through the regular battery of tests. "You're eyes are fine... maybe a little dry!" No curiosity about what she was reporting. No referral for further tests. "Well, the doctor says my eyes are fine, so my eyes must be fine."*
*yes, if you are sensing my frustration, you are reading this correctly. I am afraid that folks (especially women) probably get this kind of dismissal frequently. Believe me, if you are not seeing things correctly but the doctor says your eyes test out fine...you must insist to be checked further. Whether that be an MRI or other scanning, follow up!
Everything my mom is seeing is skewed. We don't really understand what she is seeing or what she perceives now. Today, she still knows who we are - and I am so thankful for that. I also understand that this may change at any time. She also knows and recognizes many important people in her life. If we mention a dear friend or a relative, she can usually tell us a story about that person. Her stories about her brothers are my favorites. She was obviously a bossy big sister. As a bossy little sister, I appreciate and adore this quality in her.
Can you imagine playing the piano since the age of 3... spending your whole career teaching and playing and listening to music... and then - STOP? Red Light. The muscle memory no longer works properly. The translation of notes on a page to fingers on a hand to keys on the piano is indecipherable. Nothing works. Well, at least not in the magnificent way it did before.
What is Benson's Syndrome?
It is a complex puzzle. A degenerative neurological condition with no cure. It is a new genre of music with strange rhythm and beat. The notes don't sound the same. The key signature has changed. So we have to change the way we listen and the way we respond. Major becomes Minor. Minor becomes Major.And we all tune in our ears, as I am this moment, to those beautiful times when the notes come out just right.
I think you did a very good job explaining. Now I have a greater understanding of what is going on and thus, what you are going through. Does the doctor think that she can learn (through some therapy possibly) to cope via improving auditory and tactile senses? I'm not sure if that type of therapy would exist (and I'm a former SLP) but if you like, I have a friend who treats adults who I could run it by.
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